Background

As ulcerative colitis (UC) is a chronic inflammatory disease, patients require regular follow-up with healthcare providers. Increasing knowledge in patients has been shown to improve the medication compliance and self-management of chronic diseases.[1][2] This study is to describe the knowledge of patient regarding moderate to severe UC and to assess the consistency of patient and physician's assessment of disease activity.

Methods

Biologic naïve patients with moderate to severe active UC (Mayo score >=6), aged >=18 years who received conventional therapies during the 12 months prior to the enrollment date were recruited from 46 hospitals across the following 11 European countries: Belgium, France, Germany, Greece, Italy, the Netherlands, Spain, Sweden, Switzerland, Turkey, and the United Kingdom. Patients who underwent colectomy procedure or ileo-anal Jpouch reconstruction were excluded. Medical charts for the 12 months prior to the enrollment date were reviewed to collect clinical data. Remission was defined as full Mayo score < =2 with no individual sub-score >1. Patients completed questionnaires by rating their knowledge about UC disease by 4-point Likert scale from 1 very knowledgeable to 4 no knowledge. A weighted kappa was calculated to assess the agreement of disease activity (mild, moderate, and severe) between patient and physician.

Results

A total of 250 patients were included in the final analysis. Patients' mean age was 46.6 years (SD =16.3) and 59% were male. The median duration of UC was 6.9 years (IQR 2.3-14.4). Extent of UC included 21.6% proctitis, 28.4% left-sided, and 49.6% extensive colitis. Eighty-four percent of the patients rated somewhat to very knowledgeable about their UC disease. 51% of the patients reported that UC was somewhat disruptive and 26% of them reported that UC was very disruptive. 40% of the patients perceived UC as disruptive when their UC was in remission and 91% of the patients perceived UC as disruptive when they were experiencing a flare-up. The percentage of agreement between patients and physicians regarding the disease severity was 65.7% with a weighted kappa of 0.62. About 63% of the patients reported seeking information about UC and/or various treatment options and 96% of the patients reported that doctor was the main source for those information.

Conclusion

The majority of patients had somewhat to very good knowledge about their UC diseases. UC is a disrupting disease which impacts patients' lives even in those with disease remission. There was a fair agreement regarding disease activity between patients and physicians. The doctor was the main source of medical information on UC treatment information to patients.